Fifteen years ago, when she was a child and suffering from a brain tumour that if left unchecked would have killed her, Danielle Vacheresse received heavy doses of radiation in hopes the tumour would be killed instead.

At the time, nothing was said to her parents about what the future might hold, or what the “late effects” of radiation might be.

“We were not told what to expect,” says her mother, Carolyn. “We had to make a bed-side decision. They said she would die, and die soon. What else could we do?”

Nothing, really, except sign the consent forms.

“In those days, the doctors didn’t know what might happen in the future, because children with those sorts of tumours or cancers didn’t survive. So there was no information they could give us, and we never heard the term ‘late effects’ until just recently,” she said.

Danielle would be among a generation of children who did survive, through radiation and chemotherapy. Now, 15 years later, the future has arrived. And with it — no longer an unknown — the awful physical and mental health consequences of late effects.

They range from the catastrophic — involving multiple organ failures, as in Danielle’s case — to the merely serious, the deterioration of single organs. The possibility of late effects hangs over all survivors of childhood cancers.

Hundreds of children

The Vancouver Sun has learned there are 1,500 cancer survivors who were treated at B.C. Children’s Hospital from 1982 to 2000 who should be warned to monitor their health — but a lack of funding is preventing those warnings from being delivered.

Of all the late effects, Danielle’s are likely the most tragic.

She was diagnosed with a brain tumour when she was 18 months old, and had surgery to aspirate fluid from the tumour so the buildup of pressure wouldn’t crush her brain. She also received chemotherapy injections into the brain to stabilize fluid levels and kill off the tumour cells.

At five years old, she had a series of surgeries to remove the tumour, but it kept returning. As a last resort, her doctors turned to radiation.

That kept the tumour dormant for a while, but it would return; she required more surgeries, the last in 2003. All the medical intrusions resulted in blindness, multiple life-threatening conditions and an obvious deterioration in her mental health and IQ.

She has spent years in Children’s Hospital for numerous emergencies, and more than once her parents have been told she might not live.

Earlier this year, Danielle’s parents and a number of other parents of childhood cancer survivors — now in their 20s or 30s with complex medical problems — were contacted by Dr. Karen Goddard, a radiation oncologist with the BC Cancer Agency who is researching the effects of radiation and chemotherapy on childhood cancer victims.

It led to the formation of the Pediatric Cancers Survivorship Society of B.C., as these parents realized they had common concerns and should band together to fight for better services for their adult children, many of whom are still dependent.

Their major objective is to have a dedicated clinic set up for young adults suffering from complex health problems, where they can be treated once they are discharged from Children’s Hospital because of age. They are typically transitioned out at 18.

Today, these cancer survivors move from a world-class institution where every specialty is on hand to treat them, to an adult health care system difficult to navigate — given the complexity of late effects and the care required — made worse by the dispersion of specialists across the region.

The long-term effects

“We never heard the term late effects until meeting Dr. Goddard,” said Vacheresse.

She had written off the seemingly endless medical problems Danielle was experiencing to fate.

“I remember thinking three years ago that Danielle has had so many things go wrong, but we’ve always overcome what’s been put in front of us and we’re really doing great and she’s happy in her own sort of world. But even her pediatrician was saying he couldn’t understand why she had all these issues.”

It was at this time that Danielle was found to have stage-four liver disease, which was eventually blamed on radiation necrosis.

“I mean, when does a teenager get stage-four liver disease? It wasn’t until we met Dr. Goddard that it began to add up,” she said.

Added up, this is how it looks for Danielle, who is now 20:

• loss of eyesight;

• loss of motor function that severely impairs her balance and ability to walk or even sit up;

• an endocrine system that has completely failed, so her body has no control over the retention or dispelling of fluids, body temperature, heart rate, blood pressure or the production of hormones necessary for other functions;

• stage-four liver disease;

• diabetes;

• osteoporosis resulting in fractures to the back of her spine;

• gastrointestinal problems due to the narrowing of the intestines, causing intense pain when eating;

• gynecological problems;

• cognitive impairment and reduction of IQ;

• psychological problems related to sudden mood changes.

And now seizures.

“She’s been diagnosed as a candidate for epilepsy. She’s never had seizures before, but three months ago they started. So we just keep packing on these late effects,” said her mother.

Danielle lives at home and her care requires 24-hour supervision with hourly monitoring of fluid intake and discharge. Her blood pressure is taken four times a day, and her body temperature is closely watched because it can unaccountably drop from 37 to 32 degrees, which constitutes a medical emergency.

Children of another era

Dr. Chris Fryer, an oncologist at Children’s Hospital and a medical consultant with the Provincial Pediatric Oncology Hematology Network, has watched the blossoming of late effects with alarm.

“When we started treating children with cancer, the outcome was very poor. At that point in time, we weren’t involved in long-term side effects because children weren’t surviving.

“But the situation has changed dramatically over the years, and now 80 per cent of children are being cured of their cancer,” said Fryer.

However, a large percentage of these survivors were initially treated “in another era” when heavy doses of radiation or chemotherapy were used, he said. Today, radiation is used sparingly, and more efficient chemotherapy drugs have been developed.

“When these (other era) patients were discharged, a lot of the late health risks were unknown to the medical profession and would certainly be unknown to the patients.”

Fryer believes there are at least 1,500 “other era” childhood cancer survivors who are unaware they may be heading toward a medical precipice.

“We now recognize there are risk categories — some patients are at high risk, some moderate, and some low. The biggest concern is for patients who had brain tumours because most of them were treated with radiation to their developing brain, which caused damage.”

“The other high-risk group are any patients who received radiation therapy and patients who received drugs which could cause damage to the heart,” he said.

So why haven’t they been warned?

Fryer has been trying his best.

Starting in 2005, Fryer put together a business plan that would have created a special unit to comb the records from Children’s Hospital, identify patients at risk, track them down, monitor their health and offer counselling.

But it was “too grandiose”, he admitted, and was rejected by the Provincial Health Services Authority, the agency that controls health spending.

In 2007, a pilot project resulted in 200 letters being sent to former patients “considered to be at high-risk for life-threatening health problems.” In order to mail the letters, he needed addresses, but the Medical Services Plan wouldn’t supply any and he had to petition the privacy commissioner to get them released.

“But this didn’t help much because people had moved and the addresses were incorrect. So they have been lost to followup. We just don’t know where they are,” he said.

As a result, only 41 patients out of 200 were eventually contacted and counselled.

In 2009, Fryer attempted a second time to initiate a formal scheme to reach out to former patients, but this also failed.

So in 2010, he decided to do it without funding, digging out the most serious cases — patients who had been irradiated or given high doses of anthracyclines, a class of chemotherapy drugs. But he has only scratched the surface, contacting a mere 60 patients and counselling just 15.

So what would be the cost of a modest plan to identify, contact, warn and counsel those 1,500 childhood cancer survivors who are ignorant of what they may be facing? Fryer believes a one-time cost of about $200,000 would be enough to run a two-year program.

“We can identify patients from our data source, but we need to know specifics of treatment before we can counsel them and that means going back to the original paper charts to review their histories, which is time consuming. We would need a couple of nurses to do this — it’s not something a clerk could do.

“We then need to produce a medical summary and call the patient in and counsel them on health risks. It’s very personalized. It isn’t something you can just pick up out of a book.”

As an example of why childhood cancer survivors should be warned, Fryer spoke of a patient diagnosed with Hodgkin’s disease when she was 14.

“She has had four children, has had a recurrence of Hodgkin’s, developed breast cancer and has a risk of heart problems — all associated with radiation and chemotherapy — and she’s not atypical,” he said.

“So if a teenage girl has been irradiated for Hodgkin’s, she is at an increased risk of breast cancer, and patients like this need to be counselled and have breast screening much earlier than the standard recommendation,” he said.

However, before any warnings can be given, Fryer first has to find the patients, and that would take an advertising blitz or the use of social media such as Facebook to reach those lost to the system or who may have moved out of the province.

Other options

Fryer admits that, as things stand, if he received 40 calls tomorrow from worried cancer survivors he’d be helpless.

“I just couldn’t deal with them,” he said. “We’d need people to extract their medical records and so on, and I’ve got no mechanism to do this.”

Considering what is at stake — and the provincial health care budget being in the range of $15 billion a year — those 1,500 people might consider $200,000 a pittance for a warning that they might be facing serious or even fatal late effects.

Since his proposals have been rejected by the system, it appears the only hope for warning those survivors is if some philanthropist takes pity and comes forward.

Vacheresse said the need to warn childhood cancer survivors is obvious.

“We know one mom whose son was treated for leukemia as a child, and over the years she continued to be associated with Children’s Hospital doing fundraising. Then, the oncologists started telling her to have (her son) come back and get evaluated because they were now seeing these late effects.

“She had to drag her son in because he’s now in his 30s and thought his cancer was all behind him. He came in and had an MRI and they found tumours he didn’t realize he had. They wanted him to undergo surgery almost immediately.

“But his wife is having their first child, and now he’s waiting to see the child born before he decides what to do because he’s definitely going to lose his sight — or most of it — because the cancer is on the optic nerve.”

“That’s devastating for a young man just starting off, and he wouldn’t have found out except for his mom. But what about all those others out there? Surely they should be warned, too.”

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